極重度多重障礙兒童生活品質之個案研究

A Case Study of Quality of Life for a Child with Profound Multiple Disabilities

林美玲(Mei-Ling Lin) ； 林宏熾(Hung-Chih Lin)

《身心障礙研究季刊》 6卷2期 (2008/06) Pp. 147-159

https://doi.org/10.30072/JDR.200806.0005

摘要

本研究目的旨在探討極重度多重障礙兒童的生活品質，以個案研究透過深度訪談、參與觀察、文件等方式收集資料，經過三角交叉法驗證檢視其可信度。生活品質的探討是依據Petry、Maes和Vlaskamp (2005)所發展的生理福祉、物質福祉、社會－情緒福祉及發展和活動福祉來評量，並針對這四範疇的研究發現提出建議。一、生理福祉的支援需求：以合作諮詢模式整合資源、舉辦團隊會議、辦理特教知能研習進修、提升家長健康相關知識與參與。二、物質福祉的支援需求：協助申請補助、開發科技輔具、提供無障礙環境、運用部分參與。三、社會－情緒福祉的支援需求：家庭功能的重建、增加個案的生活經驗、建立正確安全的同儕互動、建構社會支持網絡、社交技巧的課程。四、發展和活動的支援需求：多元評量綜合研判做適性安置、課程結合兒童生活中的活動。

關鍵字

生活品質 ； 個案研究 ； 極重度多重

並列摘要

The purpose of this study was to explore quality of life for a child with profound multiple disabilities. This is a case study, data collection methods including in-depth interviews, participatory observation, and document data. The obtained data were analyzed through triangulation to examine the trustworthiness. Four domains of QOL for people with profound multiple disabilities based on Petry, Maes, and Vlaskamp models were physical well-being, material well-being, social-emotional well-being, and development and activity. Recommendations are offered concerning the implications of these research findings from physical well-being, material well-being, social-emotional well-being, and development and activity. 1. On support service needs of physical well-being:the study suggests serving from collaborate approach model, holding teamwork meetings, providing special eduction advanced studies and seminars, and increasing family's health related knowledge and participation. 2. On support service needs of material well-being: the study suggests assisting to apply related allowance, equipping technical aids, providing barrier-free environment, and partial participation. 3. On support service needs of social-emotional well-being: the study suggests reconstructing family's function, increasing living experiences, building safe peer interaction, constructing network of social support, and providing social skill cirriculum. 4. On support service needs of development and activity: the study suggests multiple assessment to giving proper placement, and combining cirriculum with living activties.

並列關鍵字

Case study ； profound multiple disabilities ； quality of life

參考文獻

內政部(2007)。身心障礙者權益保障法。台北:內政部。

王榮德、游正芬、鍾智文、姚開屏(2000)。二十一世紀健康照護效性評量：生活品質與生活品質調整後之存活分析。臺灣醫學。4，72。

台灣版世界衛生組織生活品質問卷發展小組(2000)。台灣版世界衛生組織生活品質問卷發展簡介。中華衛誌。19，315-324。

林宏熾、許天威主編、徐享良主編、張勝成主編(2005)。新特殊教育通論。台北:五南。

林秋榮、葉瓊華()。